Evidence map›Paper›PMID 38801253›Full record

ArticleJournal of the American Geriatrics Society2024

Applying human-centered design to adapt the Jumpstart Guide for goals-of-care discussions in persons living with dementia.

Jennifer Im, Erin K Kross, Ruth A Engelberg, Danae G Dotolo, Anna Ungar, Elizabeth Nielsen, Janaki Torrence, Nauzley C Abedini

Abstract read
PubMed Full text at PMC Publisher
In one paragraph

Article in Journal of the American Geriatrics Society, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 3 papers.

0numbers the graph read from it
0cells of the map it votes in
3citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

3 citing papers in PubMed.

  1. Trial
  2. Article
  3. Article
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

8 authors.

Jennifer ImCambia Palliative Care Center of Excellence at UW Medicine, University of Washington, Seattle, Washington, USA.ORCID 0000-0003-3059-4586
Erin K KrossCambia Palliative Care Center of Excellence at UW Medicine, University of Washington, Seattle, Washington, USA.
Ruth A EngelbergCambia Palliative Care Center of Excellence at UW Medicine, University of Washington, Seattle, Washington, USA.
Danae G DotoloCambia Palliative Care Center of Excellence at UW Medicine, University of Washington, Seattle, Washington, USA.
Anna UngarCambia Palliative Care Center of Excellence at UW Medicine, University of Washington, Seattle, Washington, USA.
Elizabeth NielsenCambia Palliative Care Center of Excellence at UW Medicine, University of Washington, Seattle, Washington, USA.
Janaki TorrenceCambia Palliative Care Center of Excellence at UW Medicine, University of Washington, Seattle, Washington, USA.
Nauzley C AbediniCambia Palliative Care Center of Excellence at UW Medicine, University of Washington, Seattle, Washington, USA.

Funding

Hybrid efficacy-effectiveness trial to promote goals-of-care discussions for patients with Alzheimer's disease and related dementias and their family caregiversR01AG078169 · NIA · UNIVERSITY OF WASHINGTON · PI ENGELBERG, RUTH ANN, KROSS, ERIN KATHRYN · 2022 to 2024
$4.3M
Using the Electronic Health Record to Identify and Promote Goals-of-Care Communication for Older Patients with Serious IllnessR01AG062441 · NIA · UNIVERSITY OF WASHINGTON · PI KROSS, ERIN KATHRYN · 2019 to 2023
$3.9M
NIA NIH HHS R01 AG062441NIA NIH HHS R01 AG078169
6 · The paper itself

Abstract

backgroundGoals-of-care discussions (GOCD) are uncommon in persons living with dementia (PLWD) despite the likelihood of eventual loss of decisional capacity in the population. The Jumpstart Guide, an existing serious illness communication priming tool, can improve GOCD in certain populations, but has not previously been adapted for use among PLWD and their caregivers.

methodsUsing human-centered design (HCD), we adapted the Jumpstart Guide for use with PLWD and their caregivers. We conducted qualitative interviews with clinicians and caregivers of PLWD. Six team members conducted qualitative rapid analysis of interviews leading to the development of summary templates and integrative matrices. Four iterations of the Jumpstart Guide led to the final version.

resultsThirteen clinicians and 11 caregivers were interviewed. Interviews provided key insights into the unique barriers PLWD and their caregivers face during GOCD, including discomfort with accepting a dementia diagnosis and concern with using "serious illness" to describe dementia, as is commonly done in palliative care. Clinicians described differences in GOCD with PLWD compared to other serious illnesses, and the challenge of getting patients and families to think about future health states. Interviews led to Jumpstart Guide adaptations in the following domains: (1) format and structure, (2) content, and (3) specific language. Suggested changes included prioritizing naming a decision-maker, changing conversation prompts to improve accessibility and understandability, ensuring the Jumpstart Guide could be used with patients as well as their caregivers, and altering language to avoid references to "serious illness" and "abilities."

conclusionUsing HCD yielded valuable insights from clinicians and caregivers about the unique barriers to conducting GOCD among PLWD and their caregivers. These insights were used to adapt the Jumpstart Guide for use with PLWD and their caregivers, which is currently being tested in a pragmatic randomized controlled trial in outpatient clinics.

Indexed as

CaregiversDementiaAgedAged, 80 and overCommunicationDecision MakingFemaleHumansInterviews as TopicMaleMiddle AgedPatient Care PlanningQualitative Researchcaregiversdementiagoals‐of‐care discussionshuman‐centered design

Identifiers

PMID38801253
PMCPMC11226381

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Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.